Why Do We Send Teens With Autism To School?

Before you read this I am going to ask a favor, stay calm. You might even want to put your hand under your chin to catch it when it drops, in the event these comments shock you. 

I just heard this "Your son is never going to be independent, so why are you so concerned about him working? He's never going to be able to hold down a job. I mean he can't get seem to get by without one to one support. Are you sure it isn't a waste of time and you're not just pushing to have him learn things he will never really use, and maybe doesn't even care about?. I mean I understand your wanting the best for him, and that's great, but how do you know you're just not wasting both of your time chasing a life he will never live?" 

I was frozen for what seemed like forever, and I fought to push away the tremendous greif I felt hearing her words. I didn't feel angry because I really did hear this persons compassion, albeit misguided and uninformed. 

Finally I said, because he deserves as much opportunity to live his best life as anyone else!!. Then I just starting rambling and it went something like this. From the day our kids are born we start thinking about school. Why do we send our kids to school? To learn, and why do we want them to learn? So they can get a job. And, why do we want them to get a job or have a career? We want them to be able to survive, care for themselves, make friends, take pride in accomplishment and have purpose, both of which society tells us will bring happiness. We want the best for our kids. I want the same for my son and he deserves the same. There are many people who are not living quote "Successful" lives in this world who no one questioned their right to have access to learning all they could, and exposure to opportunities. Nick is a unique person, with skills and talents and he deserves the opportunity to build the most independent life he can. So that's what I am fighting for. And if he is never able to do it alone, so be it. At the same time everything he learns to do, everything that makes him more independent, gives him an opportunity to contribute to society and reduces how much financial support he will need from me and state and federal resources. 

In a nutshell, Nick being given the opportunity to be his best is the right thing to do on a human level, and it's the right thing to do on a financial level. 

News: Autism Genes Active During Fetal Development

Genes Connected to Autism Active During Fetal Development

February 22, 2015 | by Lisa Winter

photo credit: vetre/Shutterstock

Autism Spectrum Disorder (ASD) affects about 1 in 68 children. Genetics plays a large role in the onset of ASD, but the exact genes involved are not clearly defined. However, a new paper published in Neuron describes how specific genes known to be connected to ASD are active during fetal brain development. Lilia Iakoucheva of the University of California, San Diego headed up the research.

The study focused on copy number variants (CNVs) in particular regions that have previously been connected to ASD. However, the researchers soon learned that not all CNVs were activated during the same growth period. Activation of various CNVs was staggered throughout fetal development. 

The two genes, known as KCTD13 and CUL3, have ASD-associated mutations, and become activated around the middle of development. These genes regulate the protein RhoA, which is crucial to brain development. RhoA is responsible for the development and maintenance of neurons, while also assisting in the regulation of their migration.

"The most exciting moment for us was when we realized that the proteins encoded by these genes form a complex that regulates the levels of a third protein, RhoA," Iakoucheva said in a press release. "Suddenly, everything came together and made sense.”

Image credit: UC San Diego School of Medicine

“Our model fits perfectly with what we observe in the patients," co-first author Guan Ning Lin added.

Using zebrafish (a common model organism in genetics), they found that certain mutations on CUL3 adversely affected KCTD13, which, in turn, affected the normal function of RhoA. Just as the zebrafish with these mutations had head sizes that differed from typical development, so do children with ASD. Additionally, the mutations also correlated to the weight of the fish, just as it does in humans.

Moving forward, it is hoped that obtaining a better understanding of these genetic pathways and how they connect to various disorders on the Autism spectrum will allow researhers to manipulate these pathways into a potential treatment.

"The fact that three different types of mutations may act via the same pathway is remarkable," concluded Iakoucheva. "My hope is that we would be able to target it therapeutically. If we can discover the precise mechanism and develop targeted treatments for a handful of children, or even for a single child with autism, I would be happy.”

Read this next: Scientists Discover Strongest Known Natural Material

Sex Ed Missing For People With Autism Spectrum Disorder

I was listening to a 30 something man with high functioning autism and I felt a profound sadness when he shared this simple truth ...

“Sometimes I feel pretty lonely. I like to drink tea and sometimes tea is meant for sharing.".

       

My focus for the last 13 years has been on whatever stage of the process Nick was in. 

First it was early diagnosis and his health then early intervention, then inclusion, proper school settings. Most recently I'm thinking about surviving puberty, community safety, housing and employment related things. Sexuality was on my mind as it related to puberty, inappropriate behaviors and keeping him safe - but not so much in terms of sexuality and relationship building. 

I've had mom's mention getting Nick in a sex ed class and I consciously took no action because I thought it was inappropriate, over his head, out of his sphere of interest and understanding. But hearing this man speak was just one more shift, one more bonk on the head, one more reminder of my limited thinking when it comes to seeing Nick as a complete person, in this case a complete man. 

This is definitely another example of Nick's future being impacted by my limitations, more than his. Okay, seems a special ed class is in our future. Still feels funny. I've gotta get over it. 

If you're on this part of the journey here's some info I found.  If I had any doubt that I was slow to the party this website confirmed it!

http://www.autismsexeducation.com/

I'm Sleeping Alone....Mom man's up!

Part 3 of 3
We did it! It only took 10 years, but Nicky is no longer going to sleep in my bed!!!!!!!!!!!!!!!  Last night was night number 4 of "No Mommies Bed".  I couldn't believe it. I told him to go right into his bed, not Mommies bed, and he did. He did, he really did! No tantrums, no getting stuck in a loop because he was filled with anxiety he couldn't' fall asleep.  He just walked right in his room, engaged in his usual before bed chatter and that was it. He got in bed and went to sleep.

This is just what I needed to feel good about pushing him...guilt free...to the next stage.


Part 2 of 3 
http://autismdaybyday.blogspot.com/2012/01/sleeping-alonegetting-nicky-out-of-my.html

Part 1 of 3 
http://autismdaybyday.blogspot.com/2012/01/mom-in-mirrorthe-biggest-challenge.html

Autism Check List: A Complex Diagnosis

Most of us know, but there's always someone other there who needs to learn. So I'm posting 

A recent ASD checklist from the LA Times series I've been sharing. Knowing how critical early intervention is I felt compelled to share this easy tool. 

Autism Check List: A Complex Diagnosis 

There is no blood test or other biological marker for autism. Doctors rely on their own observations and what parents tell them. Psychiatry's guidebook, the Diagnostic and Statistical Manual of Mental Disorders, lays out the criteria. Many autistic traits and behaviors are seen in children without autism or with other conditions. Only in sufficient numbers and specific combinations do they add up to a diagnosis on the autism spectrum.

Stories: Discovering autism

The three most common diagnoses on the spectrum are autistic disorder, Asperger's disorder and — for children who don't qualify for those — pervasive developmental disorder not otherwise specified (PDD-NOS). As this interactive checklist illustrates, there are many ways to arrive at each, and how a child is classified can amount to a judgment call. Answer questions by clicking below or select a hypothetical case to explore how a diagnosis is reached.

http://www.latimes.com/news/local/autism/interactive/

Growing Up Hairy!

Yikes, and I thought Nicky was growing hair early! 

More proof of puberty and the disappearance of my little boy...hair is budding everywhere. His upper lip looks dirty, his leg's are getting hairy, and today I looked at his hands and they are starting to look like "Man" hands, not boy hands. I'm just not ready...not that there's anything I can do about it. Just makes me sad. Ugh.........

Facing Facts: ASD Aggression and the Real World

Nick has two deficits which are his biggest barriers to living in the community. I don't mean living an independent life, I mean not living in an institution.  Aggression and a lack of safety awareness will determine how included he will be in society. He's going to be a grown man and once again, the things people tolerate while he's little will not be accepted from an adult. Especially a big black man kind of an adult! 

Our journey working on these is constant, non-stop. We take little tiny steps forward and steps backwards, the progress is slow and imperfect, but we have made progress.  There are other posts where I show the tools we've created, but this is the first video on the topic.

I learn so much every time I meet with ABA behaviorists, so I decided to tape a recent meeting with members of his behavioral team, where we talked about strategy. It's an unedited piece, in part because I don't know how to edit and I didn't want to risk taking something out that might be useful to someone :). 

Here's to helping our kids. 

First the Vacuum, then the World! Vacuum & Independence, a connection.

Nicky looks about as happy as any other teenager asked to vacuum!  However he’s learning more than most teenagers, he’s learning focus in ways that are critical for him to be out in the world. Right now he can’t drive a shopping cart without running into people or abandoning it. I love vacuuming; it's helps the family, Nicky earns money for things he wants and if you look closely you'll see he's learning how to stay focused on a tool, a task and his environment all at the same time. That's a BIG DEAL for him. True, enough vacuuming may take its toll on the walls he runs into,  but it’s better than being hit by a shopping cart!  Imagine all the things he will be able to learn once he gets this down; grocery shopping, safely riding a bike, roller skating, who knows! 

A typical moment. He's as unhappy as any
 kid doing chores. 

Colors and ASD...A Unique Perspective with Purpose

Nothing with Nicky happens in developmental order, but everything has order, including colors! Check this out….  

When Nicky was a little guy I couldn't get him to pick up a crayon or show the slightest interest in a coloring book. When he was 10, I introduced him to word searches to build off of his love of the alphabet and develop an age appropriate activity he could do on his own.  He took to the word searches. At first he circled the words with a pencil, then pen and next he found color markers. He loved circling each word with a different color marker. He 

loves all the colors of the markers. Now he's into his coloring books. (Good thing I didn't toss them all in the trash!.)  But, he doesn't color like the other kids, he does it his way! ASD is so interesting. You can see how he uses all the colors in a single image from a coloring book and if you look closely at the word search you see he circles the word and marks it off the list with the same color. He's created his own color key! Amazing :)